The things I learned from Dad

 

I sat with Dad and Claudia in the bedroom where Momma died to glean valuable information that I could pass on to you. It would be difficult for Dad to discuss these issues, but I knew I should.

U He stressed you should not put something off, whether it be discussions, decisions, or significant things.

U Don’t put faith in the doctor’s time frame. They don’t know. God is the only one who truly knows. Mom died twelve days after she got her feeding tube. 

U He mentioned calling the Social Security office to claim a disability, especially with Mom having ALS. It took two to three months to get her first check. She only got one disability check even though she could not work for a long time. From her diagnosis to her death, it was only about nine months. Search on the web under Social Security disability.

U The ALS Association of Georgia had good resources and information.

U Dad got a power of attorney because Mom couldn’t sign her name. His financial advisor suggested they get joint accounts because it makes it more manageable.

U Set your investments as (Payable On Death). A POD is any account, investment, etc., given to a specified person when you die. You don’t want to go through a trustee or a banker to disburse money.    

U What have you learned from reading this book?  U

In Their Shoes

Most of what I’ve experienced is for the benefit of others. I’ve reflected on my current pain and quest to find what’s wrong. I have walked in the shoes of those who believe they have a terminal illness, and I understand that they constantly grapple with complex symptoms.

The long wait for my diagnosis is challenging. Other doctors seemed they didn’t care or care enough to help—the list goes on. At least I have drugs to relieve my pain. 

The bottom line is compassion. When a person is facing illness, show empathy. We have no idea what they’re going through until we’ve walked in their shoes.

U Can you show compassion for those with an illness, disability, or disease?  U 

U Have you wondered what it’s like to walk in their shoes? (We should be thankful for the little things.) U 

 

Ministering to PALS and CALS (part II)

Some ALS patients choose to be on a ventilator to help them breathe. Being on a ventilator can extend patients’ lives past the average of 3-5 years. However, doing so could be costly and a possible burden on families. One lady had been on a ventilator for twelve years and another man for fourteen. They have the best attitudes and lead good lives despite the negative aspects.

Some people I follow on Twitter, Facebook, and blogs use special communication devices. One woman still has her voice and uses voice-activated software to speak to her computer and type words. Many people with ALS (PALS) can no longer use their hands due to paralysis. One man pecks the keyboard with his middle fingers, while several PALS use computers that track their eye movements to write.

I joined an ALS Forum and posted two chapters of this book weekly to help people now. My posted tread is located under the Past Caregivers (CALS) section. CALS (caregivers of PALS) check this section for support and often have many questions because of a PAL in their care. I get excited when a CALS caregiver leaves a nice comment on my thread. It’s rewarding to see I may be helping someone now, rather than when my book is published.

Ministering to PALS and CALS (part I)

Several people on Facebook ALS groups have invited me to join. Most people are there to support one another. Some are PALS or family members, while others joined because a loved one died from ALS. Still, others participate to raise awareness of the disease or to raise funds for a cure. 

I follow a PAL on social media who's a Hospice Chaplain but resigned because he, too, had ALS. These people grew on me—I view them as family, though we haven’t met. We share a bond and a connection that reminds me of the Christian body of believers.

This heart of mine (part I)

I debated about putting this chapter in because I wanted to “mask” this situation.  This is the most sensitive topic I think I have written about.  I did not want to hurt Dad’s feelings, but I wanted to prepare you with all that may lie ahead of you.  Hopefully, this book has helped you prepare for these situations, so they will not be a surprise to you.

This past Christmas, my sisters and I talked about Dad dating.  It was late, and we were all in the kitchen except for Jamie; she was at home.  Jennifer mentioned Jamie had said she would need two hands to count all the dates Dad had been on. 

Someone brought up the topic of Dad having a framed picture of a lady on his chest-of-drawers.  I had to turn my back toward my sisters at one point because tears came to my eyes.  I was not ready for this.  I was not ready for another lady to come into Mom’s house.  I guess I always thought Mom and Dad would be together forever. 

Mom had mentioned about Dad remarrying before, but all along I had not even thought about it until now.  We thought about the house and what exactly Mom had written in her will.  She was concerned for us, and I think she put in her will we would get the house when Dad passed away.  She had everything all planned out and had thought about everything; whereas, I had not thought about any of it.  That is why she hid some money around the house for us because she was trying to look out for my sisters and me.

U  How can the information of your loved one dating someone be introduced/handled?  U

Yesterday, February 6^th, I talked with Jamie on the phone.  I told her I was going to call Dad, and she said he was out of town.  I asked her where he was, and she said he could tell me if he wanted to when he got back in town.  I told her not to hide things from me.  I asked her if he was on a cruise with another lady.  I just guessed, and I was right.  She told me some story and then said he went to the Bahamas, and this other lady went as well. 

Dad dating someone else is just a sensitive subject to me.  I know it is only fair for Dad to move on with his life, and it is only a reality for him to marry again.  Though, it does not make it easy on me.  I don’t want someone else coming into the house and changing everything.  Just to see another woman in the house is going to be hard to stomach.  Not having Mom around has been hard, but another woman in the house will always be a constant visual reminder of Mom not being there.

For now, I will have to wait

I guess what I have been struggling with lately, is dealing with not wanting to be in a hurry to get to Heaven.  For five months, I thought I was going to die, and now I am not.  Well, I am not going to die of ALS.  It is not that I am depressed, but I was ready to go I guess.  I want to be with Him, and for now I will have to wait.  I miss Mom and long to see her again and to be with Jesus.  To just be able to look at Him face to face and live with Him in Heaven.  One day, to not experience sorrow, pain, and suffering.  I don’t know what it will take to get out of this mind set.  I imagine a lot of prayer and just cuddling up next to Him.

U  Are you standing as close as you can to the cross?  U

The results

I went to get my blood work first on Friday. The receptionist said she would call me on Monday with the results. I then went to get my MRI. He said he would send the results to the doctor Monday, so however long it takes the doctor to read the results is when I will find out.

I looked up MS on the internet this past weekend to try to learn a little more about it. I don’t know if everything is okay. I may not have ALS, but my muscles are not the same. So maybe I do have MS. I thought about him telling me the results over the phone meaning nothing was probably wrong. He could also call today and want me to come in because something is wrong. He was adamant on ruling out MS though. Hopefully, I will find out today and be able to move forward.

Evelyn was not very happy with me Friday. We needed her to pick up the kids, so they would not have to go to the doctor’s office. She asked me what I was going to the doctor for, and when I told her she said, “Don’t hide things from me.” I told her I had not said anything to her because I had not even told my family yet, and it was not the right time to tell them. We have had a lot going on in our family lately: Dad losing his job, Mom dying, Jamie losing her baby, and Aunt Jackie getting cancer.

Last night, I called Jennifer. I wanted to know how the ALS Walk-a-thon went. She told me she already raised $2,500, and I had not even sent her my check yet. I wanted to tell Jennifer what was going on with me. I knew out of all my sisters, she would be able to handle it without me knowing the results. The first thing I told her was I did not want her to be mad at me. She asked me how long I knew. I told her since the beginning of May. She understood and said she would have done the same thing. I was glad to finally be able to tell her. I told her I would find out the results this week and would call her. I also told her not to say anything to Dad and Jamie because I would tell them this weekend when I saw them. I will also call Joann and tell her. The tricky one is whether to tell Nana. If it is just BFS, I probably will not tell her. If it is MS, then I probably will wait a little. She worries so much and lost weight when Mom died. She needs to get strong.

The wait has gotten a lot harder because it is Tuesday around 11:00 a.m., and the doctor’s office has still not called. It just leads me to confirm I have MS. If the blood work would have been normal, they would have already called me. They are probably getting the MRI and checking it out thoroughly.

I finally called the doctor’s office either Tuesday or Wednesday to ask them the results of my blood work. They called back and said the blood work was good. She mentioned something about the B-12 and did not know what he would do about it. I started taking vitamins hopefully to correct the B-12. I called back Friday to ask if they had the results of the MRI. I told her I would be out-of-town and for her to call my cell phone with the results, so I could tell my family in person when I saw them this weekend.

I told Jamie as we were eating dinner, once I got to St. Simons. I brought the subject up by asking her how I should tell Dad and with what details. She suggested I not mention about the MS and that I got a MRI but had not gotten the results. I told Dad, and he was fine. He just wanted me keep an eye on it since Mom died of ALS. I also called Joann and told her while I was on St. Simons. She could not believe I went through that without being able to tell them. It would have added too much stress on my family.

Yesterday, October 18^th, I finally got the phone call I had been waiting for. She was sorry she had not called, but the MRI was read and was fine. I called Dad, Jamie, and Joann, told them the news then went to sleep. The one scripture I read in the last couple of days was very relevant: “I know the plans that I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me in earnest, you will find me when you seek me.” Jeremiah 29:11-13.

U Are you letting God be your refuge and your hope? U

U Are you relying on the doctor’s time frame in getting the results to you? (DON’T!! I put myself through too much stress assuming things were wrong because they did not call when they said they would!) U

A glimmer of hope

I went to the neurologist yesterday.  The doctor gave me a very thorough exam.  I was in the exam room for almost a full hour with the doctor.  I took my devotion book in which I had written down all the symptoms I have been having.  I told him about all the symptoms, and he asked a lot of questions about Mom.  I fought back tears as he asked questions about her feeding tube, and I told him how quickly the disease ravished her body.  It was not until the end of the hour that he told me what he thought.

He said I did not have any of the symptoms of ALS, and I probably had Benign Fasciculation Syndrome.  He said everyone does not have it, but it is more common than ALS.  Benign Fasciculation Syndrome (BFS) does not turn into ALS; they are two separate things.  It is not something that will go away, and my muscles will always twitch.  He did not want to do the nerve test again because he thought it was not necessary.  He was not saying I will never have ALS, but right now I do not have the symptoms that would indicate I have ALS.  I need to get my blood results from by regular doctor to see if they checked my thyroid and another test to check my muscles.  If my blood was not checked for those things, I have to go Friday and get more blood work done.  I told him the reason I wanted to see him is because he is a Christian. 

He did want to rule out MS (Multiple Sclerosis).  So Friday afternoon at 4:45 p.m., I have to have an MRI on my head.  He was telling me things they typically find that aren’t a big deal to prepare me if they found those on my brain.  I told him there isn’t anything up there anyway (in my head).  He asked me if I was getting weaker, and I told him I thought so.  I told him I could not objectively assess what was going on because I know there is something wrong, and I am very in tune to my body.  Basically, I was telling him I over analyze everything.  He said a phrase I had never heard before.  He said, “You know there is an elephant in the room.”  Meaning, I know there is something wrong, therefore it may seem bigger than it really is.  He wants to see me back in three months.  So in December, I have my next appointment.

He’s prepared me

Tomorrow, I will go to the neurologist.  I am ready.  I have had a lot of time to think about this, and I am ready to tackle it head on.  I know I will need the Lord’s strength to get me through.  Nancy asked me if I was nervous about tomorrow, and I told her, “No, not yet.”  She told me not to be.  Even as I sit here, my tricep muscle in my left arm is twitching.  It has been twitching throughout the day.  Since muscle twitches are so common now, I don’t even notice them much because it is so frequent.

During the prayer meeting, I asked the teachers to pray for the doctor to have wisdom.  A teacher asked if the prayer request was for me, and I told her everything that was going on.  She made some comment that I was needed to help with the task ahead of “teaching” the students (meaning, there was much work to be done with instilling Jesus in the kids.)

ALS Walk-a-thon / Do not be anxious

Jennifer told me there was a walk-a-thon in Atlanta to raise money for ALS.  She told me she and a friend were going to walk, and she asked me if I wanted to do it as well.  She was going to get the information to me so I could sponsor her if I decided not to walk.

U  Are you willing/motivated to help raise money by being in a walk-a-thon to find a cure for an illness?  U

Yesterday, I sat on my front porch and prayed I would not be anxious about next week’s doctor appointment.  A flood of thoughts again went through my mind.  Would I be strong?  What assisted help from the doctors would I want?  Do I want a trach or a feeding tube?  I know I don’t want to live with a trach, but I guess I won’t know until it is staring me in the face.  I thought about the issues of me being in a wheelchair and how long they would let me work.  How would I tell the kids at school, and what should I tell them?  How would I tell my sisters and my father?  Would I be able to tell them in person?  When would be the appropriate time to tell them?  Should I take the family on a last ditch vacation like to Hawaii and how quickly should we leave before too many symptoms hinder the vacation?  How would I pay for it?  I think one time I even thought about being okay about having the disease.  Where would I sit in my wheelchair in church?   I thought about the church having to deal with a terminally ill person and people pulling together and helping out with meals and other things.  I also thought about how I would enjoy sitting on my front porch with a blanket over my legs while in my wheelchair. 

My fourth toe on my left foot was pulsating.  I could feel the pulsation run down to my toenail.  It did this all day.  It kind of reminded me of it being numb, but it wasn’t.  I have had tingling on the outside of my left foot also for a couple of days.  I don’t know if it is from my shoe or not.  Today, on the outside of my left ankle bone, it started pulsating as well.  These new symptoms brought on a flood of thoughts.  I got my calendar out and thought I would look when the twitches started compared to when I hurt my back.  I thought maybe all of these symptoms started after I hurt my back.  Maybe these symptoms were because of my sciatic nerve.   Well, I was wrong!!

Next year

I have already begun to pray what I am going to do for the next school year.  Then I catch myself and wonder if it is really going to matter.  If I do have Lou Gehrig’s disease, will I be able to teach?  Do I want to coach next year?  The new school will probably be complete by December of the next school year.  It will be so exciting having a new gym, and a new school.  What does Jesus want me to do?  My body continues to twitch, and I have had a burning sensation in my left calf muscle for three weeks now.  I woke up this morning and my right calf muscle just hurts.  In two more weeks, I will go to the doctor.  I have been praying for wisdom for the doctor and for myself.

I haven’t been talking with Paul about things lately.  To me, he’s not going to accept it until he hears it from the doctor.  Fluid has been pooling in my hamstrings for no reason this week, and I have had Paul rub my legs.  I mentioned to him something is seriously wrong, and I was going to see the neurologist in two weeks.  He couldn’t understand about my legs burning.  I told him that was the best word to describe it.  I showed him where I have been journaling about my ailments in the back of my devotion book. 

A new fire

There have been so many things bombarding me lately that have to do with my impact on the lives of my students.  I also within the last week watched Mona Lisa Smiles.  A school teacher poured her life into the college students she taught, and the movie showed the impact she had on them.  This summer, I watched Emperor’s Club.  It was about a teacher and the impact a teacher had particularly on one young boy.  The teacher did not know the impact he had on the young boy until the boy was older and told him so.  The grown man even asked his teacher why he never gave up on him.

My perspective has changed my life.  I’m not totally changed yet because I haven’t been told I have Lou Gehrig’s disease.  I enjoy seeing a chipmunk at school that I named “Dasher.”  I watch him dash in and out of his hole in the ground and scamper around.  I gather him acorns and leave it by his hole.  Just watching God’s creation at work brings me peace and tranquility.

 

I sat on my front porch again the other night and felt the Holy Spirit speaking to my heart, but I did not hear Him say anything.  I just felt my heart pounding.  Maybe it was because I finally sat and listened, something I do not do much at all. 

Tuesdays with Morrie

Paul told me he saw a movie on TV I needed to see.  We went to rent it, but it was already checked out.  We went to two stores that night to buy it, and neither one had the movie.  The next day Paul went to another store and found the movie. 

The movie was a very hard movie to watch because it was about a man who had ALS (Morrie), and he ended up dying at the end of the movie.  His former student came to visit him each Tuesday, and Morrie taught him many life lessons.  Morrie slowly started to deteriorate, and it reminded me of watching Mom lose the ability to do things.  He struggled to hold his glass to drink, he was unable to drive, and he needed people to get him up and down out of a chair.  I think one of the hardest parts to watch was seeing him crying in bed when he dropped his pencil.  He thought of something he wanted to write down, but he could not pick up the pencil.

If Paul was not in the room, I would have openly lamented out loud.  It wasn’t a cry like you have when you watch a sad movie and have tears in your eyes.  I was crying, crying.  One time I let out a noise as I was crying and stopped quickly because Paul was in the room.  The movie flooded me with so many emotions and memories of Mom, but I was glad I watched the movie.  I told Jennifer and Jamie last night, I think they should watch it.

Standing still in time

Today was really strange.  As I was riding back from the movies, I started thinking about everything that has been happening to me.  I thought about my kids then felt peaceful.  I noticed the cross on a nearby church pass through the direct sun above then a dove flew over my car.  The next few minutes were very strange, like I have never experienced before.  I really can’t put it into words because there are no words in the English language to describe it.  If I had to explain it, I would say that as I was driving it was as if everything was standing still even though it was moving.  I was driving, but I really was not there.  It was as if everything stood still and all was quiet.  This continued even after I got out of the car, so I went out to the front porch to sort things out.  I sat down in the rocking chair to think, and then it was okay.  My next thoughts were, is this it?  Am I going to die today, this way?

My head sometimes has felt as if it were numb over my left ear.  When it happened before, I can’t remember where it was that was numb or how long ago this happened.  When I am in the car and the air conditioner is blowing the air near my ear, my ear feels sensitive to my hair touching it.  I am going to see a doctor next week, about a strange popping that I has been happening in the left part of my neck, as I reposition my head on my pillow at night. 

I will bombard him with all the other crazy things that have been happening to me, and I will ask for guidance as to where I should go from here.  I guess I should see a neurologist and maybe get a cat scan.  I would just like to know what is going on, and I may not get the answers I want right away, but hopefully I will. 

My neck has been real stiff today, my skin has been itching a lot in different places, and I seem to have a lot of gas lately.  Basically, I am falling apart.  Ashton is sitting next to me and wants to read what I am writing, and I told him he couldn’t.  He did not need to know what I was writing about .

If this disease is going to take my life, then I am going to be proactive and make sure the spiritual things I want to teach my kids will be accomplished.  Ashton was watching baseball on TV today and was speaking as if he wanted to be a professional baseball player.  I told him whatever he did he would have to do it as unto the Lord.  He noticed how one player threw his bat and helmet down, and he made a comment about it.  I told him a lot of young people were watching that player, and he needed to be an example.  I told Ashton even if other players were doing something wrong, he should not jump in.  I am also trying to be sensitive when the kids ask me if I can do something with them.  Last night, it was Ashton wanting to play UNO Attack while I was typing, so I stopped and played with him and tonight it was Lauren not being able to get to sleep.  I took my laptop onto my bed and typed in there as she lay down next to me.

U  How can you pour your life into your children/grandchildren?  U

U  Have you instilled Jesus in them?  U

Symptoms

 

While the muscle twitching has still been going on for over a week, I have noticed my foot occasionally will catch on the pavement as I walk.  I just kind of catch myself and not fall.  Today, I had to scoop ice cream for a birthday party.  The ice cream was very hard, and I had difficulty scooping it as anyone else would.  My arm though was exhausted.

After the disease would leave my arm paralyzed, I thought about wearing a sling on my arm instead of letting it dangle down.  As I am writing this though, I have not been to the first doctor but just know that this is my prognosis.  I thought about this upcoming volleyball season and whether or not I will be able to finish it.  I also wondered whether or not I will be able to finish the school year and what the kids at school will think.  I was just flooded with thoughts today.  I thought about my sisters and Dad wanting to come up and see me and when I should tell them.  I thought about my shower and having wheelchair access.  I thought about how quickly ALS would ravish my body, and how I would not be able to run my fingers through Ashton’s hair.  Yep, just me and God; that’s all I will have.

Graduation

We had our graduation ceremony at school today.  I always enjoy watching the students graduate and as usual was touched emotionally during the ceremony.  The part that was difficult for me was the senior video they showed with various pictures of the students when they were little.  It made me think about my kids and not getting to see them graduate.  I thought about gathering their pictures this summer for them to have for their graduation. 

What He is teaching me

As I was driving home today, the thought passed through my mind about what the Lord was trying to teach me through all of this.  The two things that clearly appeared to me were to be satisfied with Him and only Him, and to depend on Him.  As Mom was slowly deteriorating, Jesus was all she had to get her through each minute and second of the day.  There were times no one was there to comfort her during the wee hours of the night or during the day as she was scared, lonely, and discouraged.  Sure she could have woken Dad up and sought his help, but she probably was tired of having to wake him up for every other little thing.  Can you imagine not being able to pick up your hand to rub your nose when it itched?  She had to totally depend on Him.  Maybe this is just preparing me for things to come.

U  Are you satisfied with Him and only Him, and are you depending on Him?  U

A note from a friend

As I was waiting to go into church Sunday, I read a card I received from Nancy.  In the card, it stated the healing scriptures I have been dealing with may be for my own benefit.  Now that I look back, it was for me.  She also wrote and told me He (the Lord) may use this time to force others to grow closer to Him in a way they never would have.  The Lord already knew what a stressful year it had been with starting a new business, teaching full time, coaching, and trying to keep on top of being a mother and wife.

I decided yesterday to tell Nancy I thought I had Lou Gehrig’s disease.   I knew she would pray for me and not tell anyone. When I told her, she said she would pray for me and not tell anyone.

At the bottom again

I went through a series of events that sent me once again to rock bottom.  I think this was the lowest moment in my life.  One thing concerned my job and possibly not getting to coach my varsity team, but the other was even more devastating.  Friday night, I came to the realization I may have the same disease Mom died from.  I am so tired of crying.  I am ready to be on the mountain top again.  I’ve been having a lot of twitching in my muscles lately.  A little over a week ago, it was a twitch in my right calf muscle.  For the last week, it has been a twitch in my upper arm.  For two days, it was pretty much been on and off all day.  As I have been reading stories of people and their struggles with ALS, muscle twitching has been a symptom in a lot of cases.  I will also have a random twitch here and there in other body parts.

I basically accepted this was the case and broke down Friday night.  So many thoughts ran through my mind:

*How I got what I wanted about being with Jesus.

*My pride in occasionally thinking of the muscular body I had, and now it would be wasted away.

*Paul having to deal with three businesses and me.

*Thinking about the things I would find solitude in.

*My job.

*My church having to go through what Mom’s church did.

*When would I tell my sisters and Dad?

*Would I able to be as strong as Mom was? 

I thought it was too early to tell my family because I did not want to stress them about whether or not I had ALS.  I do wish I could tell them, so they could pray for me.  But for now, Paul is the only one who knows.  At school and church, I just say I have an unspoken prayer request.

U Are you looking at the Lord or your circumstances?  U